Potty Training and hypotonia and/or other developmental delays

[2boyzmama]

Connor is approaching 3 (Mar 3rd is his birthday). We've been "playing around" with potty training, never putting much emphasis on it, watching/waiting for his signs that he's ready. I've always read that kids with his syndrome are late to train, but they also typically have some severe behaviors around his age and he doesn't have any, so I wasn't sure if there was a connection or not.

Today he keeps taking his diaper off, he's brought me two poopy diapers already (joy). I told him that he has to have either a diaper on, or underwear on. So he took his diaper off, put his underwear on, peed in his underwear, then took them off and brought them to me. Then as I was taking them to the laundry, he went into the bathroom and sat on the potty. So it's like he has the whole process mixed up, he sort of knows what he's supposed to do, but isn't quite there yet.

Every time we've tried an underwear day, he pees like every 15 minutes! And it's only a very small amount each time, like a tablespoon or two. I've never changed a dry diaper.

So that got me thinking...is he not capable of "holding" his urine? Does he just pee a little bit every time that he feels the least bit in his bladder? Maybe he's not even controlling it, maybe it's just coming out on its own.

He has hypotonia, and he does have digestive hypotonia, so I guess it would stand to reason that he may have hypotonia in the muscles that control urination as well, right? He's had a VCUG and renal scans, and it was normal, no reflux or anatomical malformations in his urinary tract. He has a sacral dimple, but it's shallow enough to see the bottom of it, and xrays are normal (he's had a brain MRI, but not of the lumbar region, there's never been a reason to test further).

Anyway...at not quite age 3, I guess this could still be considered "normal", right? But are any of you aware of a link between hypotonia and late potty training? Is the frequent small urination worth mentioning to any of his drs, and if so, which specialist? (he only has a dozen or so, urology NOT being one)

[preemiemamarach]

I've been told- anecdotally- that there's a link, but I've never seen actual data to support it. We have the same problem with constant urination with L, who is now 30 months- I just attributed it to the fact that his diet is almost entirely liquid.

L can't get his diaper off yet, but he certainly knows when he's pooped and brings me a clean diaper and wipes to change him. He has gone through phases of finding the potty fascinating, but nothing approaching functional use yet.

Honestly, I was planning on doing diapers (and possibly pull-ups) and hoping he starts consistently sitting on the potty- but I don't expect him to be able to hold urine for a long, long time, both d/t liquid diet and hypotonia.

[PikkuMyy]

I wish I had more time to write but I will say that in my experience with children with quite a few types of disabilities, most of the children that potty trained successfully never "looked ready" before we started it.

I would say, in fact, that even in my experience with older children, it works really well when you start before they are ready, and get them used to the habit of it even before they are ready to do it properly.

The children that I helped to PT were definitely not "ready". Most were nonverbal, did not seem to care whether they had a dry or wet diaper, did not come tell us when they needed a change, some smeared poop, etc.

But they learned to use it very successfully none the less through lots of intense, consistent practice and nothing but positive reinforcement for success. One of them also peed small amounts very frequently throughout the day, but this changed as we began to take him to the potty very frequently at first, and then very gradually upped the time between trips 5 minutes at a time until he was able to go a couple of hours in between trips, and then would just go when he needed to.

I can give you more details on the various methods we used based on the kids, but it will involve being home for several days in a row at the beginning with a lot of time spent in or near the bathroom. It really does work, though, even for children that would be considered rather "low functioning".

[jnet24]

my son is just a few months older than Conner. He has SPD and phonological issues, so we are not versed in hypotonia, but I just wanted to add that Michael was no where near what most parents would think of being ready to PT. He started out where Conner is now. I think not wanting to be wet, understanding what it means to be dry and having a pooppy diaper, bringing you soiled diapers. wanting to wear underwear are readiness signs. We just went with it and he is doing great. He peed frequently at first, but has since learned to hold it. We also try to take him to the bathroom at the same time roughly everyday. He has weeks where he stays dry, and then will have days where I swear he pees every hour in his underwear. It has been this way since August. He never tells me he has to go, we just take him and he goes. Good luck.

[Purple Cat]

A Potty Training Specialist -- I'm quite serious -- came and spoke to a parent's organization I attended. She had multiple degrees, nursing, therapist, etc., and was called in as a specialist in Early Intervention and the public schools when they had complex cases, like a 10 y.o. with potty learning difficulties.

I talked to her about my son with hypotonia. She said to expect him to potty train late because hypotonia makes it difficult.

[KCMichigan]

One of my DDs has hypotonia w/ mild cp (she is fully ambulatory) and sensory issues. She PT at 3 y 10 1/2 m after 3 months of intense practice. She poop trained before she pee trained (easier to sense when you need to go).

We 'played' with PT for over a year- she still has a hard time going before it is too late, and had a lot of accidents at first. Now at 4 y 2 m she is day/night trained.

[KimPM]

Have you tried having him go naked on his lower half? Maybe if he literally sees the pee coming out onto the floor he will make the connection.

This is the only way it worked for my DS, who has low tone in his trunk area. He didn't seem ready before age 3. It was only after I tried lots of different things starting when he was 3 years and a couple months. I didn't try the naked thing on him until he was about 3.5 years. And that took a few weeks of going half naked. Now generally he goes to the potty when he has to go. But he still has issues where he will do a little spot in his underwear before he realizes he has to go. This also occurs sometimes when I take him to the potty before I think he should have to go. It's like just the *suggestion* of going pee makes him relax his muscles, but maybe he can't fully feel it until he pees a little.

ETA: Just noticed that KCMichigan's DD also has a hard time going gefore it's too late. I think there is something to low tone connected to more difficulty pottying. Seems like maybe it just requires more patience, effort, and vigilance on our part.

ETA2:

So he took his diaper off, put his underwear on, peed in his underwear, then took them off and brought them to me. Then as I was taking them to the laundry, he went into the bathroom and sat on the potty. So it's like he has the whole process mixed up, he sort of knows what he's supposed to do, but isn't quite there yet.

Every time we've tried an underwear day, he pees like every 15 minutes! And it's only a very small amount each time, like a tablespoon or two. I've never changed a dry diaper.

I recall my DS also having these issues when I was first working on it with him. Both the "having it backwards" and the peeing every few minutes. It's like that's what he's used to...just peeing out every time he gets some in his bladder. For this, I explained to him about the bladder and how it works to hold the pee. I used the analogy of a "tanker truck" since trucks are his favorite thing. As far as having it backwards, having him go naked and after the first couple of pees on the floor, each time I reminded him to put his pee in the potty. Then he got the idea.

[KCMichigan]

Originally Posted by KimPM

But he still has issues where he will do a little spot in his underwear before he realizes he has to go. This also occurs sometimes when I take him to the potty before I think he should have to go. It's like just the *suggestion* of going pee makes him relax his muscles, but maybe he can't fully feel it until he pees a little.

ETA: Just noticed that KCMichigan's DD also has a hard time going gefore it's too late. I think there is something to low tone connected to more difficulty pottying. Seems like maybe it just requires more patience, effort, and vigilance on our part.

I agree----I really think hypotonia is related to not getting a 'feeling' of urgency...we still deal w/ 'damp' underwear a few times a week because DD doesnt realize she needs to go until THAT second. She will do the 'potty dance' at times w/o knowing it and then say "Oh! I DO have to go!" if I point it out. IF it has been a while, a reminder to her that it has been a while and she will stop, think, and then run to the potty: and then go a lot!!

Somehow the night training happened a few weeks ago, with no attempts on my part (or talking about it) she started staying dry at night so we tried no Pull-Ups. A few accidents, but 90% of the time she is good all night!

Her OT says kids w/ low tone tend to train late and it takes longer.

[sbgrace]

We had to naked on the bottom train my hypotonic kid.

When I first tried with Caleb (not special needs and around Connor's age) he peed every 15 minutes give or take too. I talked to some people and a pediatrician and decided that he didn't have the physical control to train yet. So we waited for him to mature a bit more.

[2boyzmama]

Thanks for all the experiences, guys.

I'm not really in any huge rush to get him trained, in fact from a practical standpoint, I'd almost rather he be bigger--he hardly fits into clothes now as it is, I remember Ian going down a size when we got rid of the bulky diapers and switched to underwear. Connor wear a 2T only because of length right now, really he's too skinny for 2T still. 18 months is a better size, but he's too tall for it.

Anyway...I've let him be naked a few times, but then the problem is finding the tiny pee spot. He'll sometimes come tell me when he peed, but then he can't find the spot again Then later I step in a wet spot and wonder if it's baby drool, dog drool, or Connor pee!!

I think for now we're jsut going to continue "playing around with it", meaning on days when he refuses to keep his diaper on, we'll let him be naked or in underwear. And we'll continue to ask if he wants to sit on the potty. He sits on the potty at school at every diaper change, but for some reason here at home he often resists it.

[2boyzmama]

Well, he did it again! I was mopping the kitchen floor when I heard suspicious noises from the bathroom (last I knew, Ian and Connor were in the playroom having a lightsaber fight!). I went in to find that he had removed a poopy diaper, sat on the potty (of course smearing poop everywhere), peed on the floor (possible he was actually on the potty when he peed?), and the toilet was clogged with about half a container of wipes because he was trying to clean himself.

What a mess! I got him in the bath, unclogged the toilet, put the potty chair in the kitchen sink with bleach water, cleaned the toilet, the sink, the stool, and the side of the tub; then mopped the floor. He's still in the bath, I drained the water, ran a clean bath, and let Ian in too.

I have to remind myself that this is actually progress

[sbgrace]

Ugh. That would make me insane. I don't suppose you could somehow limit his access, at least to wipes? Can Ian give you a heads up when Conner is trying the potty bit if he's around. My boys were not that ambitious early on/before they had the ability but they didn't have an older brother to copy.